Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-30-2014, 08:50 AM #1
tdggal1980 tdggal1980 is offline
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Confused CRPS & Surgery

Good morning All,

I was recently diagnosed with CRPS as a result of foot surgery which was completed in July & August of this year. I currently have 6 screws in my foot and they are causing bone pain on top of the nerve zingers, numbness and pain from the CRPS. My foot doctor recommends having the screws removed as she believes removing them will help. I had the exact same surgery completed last year for my right foot and had no issues (of course this was before CRPS). I know as a general rule surgery is a huge no-no for CRPS patients but there are times I can barely walk because of the screws and if you throw that in with the CRPS pain it can get pretty unbearable.

I'm really scared of how this might affect the CRPS but I kind of feel like I don't have much choice here.

Any advice/recommendations? If you have had any experience with surgery after a CRPS diagnosis please let me know how it went for you. Maybe it'll reassure me or freak me out more but I'll appreciate it all the same!

TIA!
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Old 12-30-2014, 02:50 PM #2
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Default Re: CRPS and surgery

Hello,

I do not have an official CRPS diagnosis but have many of the features. These were particularly bad before I had a nerve release surgery done. Though I later developed symptoms again after another unrelated procedure there was a period post-op that my symptoms went away almost like flipping a switch. Vasomotor symptoms and shooting pains resolved. There is always a possibility that your hardware is aggravating a nerve and removing the source of irritation could allow the potential for healing. Your surgeon would need to be extra cautious and meticulous in trying spare small cutaneous nerve from harm when making your incisions. If you decide to go ahead Arm yourself with knowledge and a good anesthesiologist who is up on how to help you with the right kinds of blocks, neurontin pre- op etc. Also, Hit the vitamin C and ask for healing thoughts.

Sending the best for 2015
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Old 12-30-2014, 06:17 PM #3
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I do agree with the Littlepaw.

My experience is that I developed CRPS after a toe fusion surgery.

As we were trying to figure out what was going on and get a solid diagnosis, my podiatrist removed the screw that he used in the fusion to see if that was responsible for my symptoms. Didn't make a difference one way or the other, so at least the screw is gone.....it was kind of bothering me as some hardware certainly can.

So good luck with your decision; these are not easy ones. As they say in the financial industry, "your results may vary". And they do. I think surgery with CRPS can be kind of a coin toss.

Always have to weigh "risk vs reward". Easier said than done, eh?

Please keep us posted.
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Old 12-30-2014, 09:50 PM #4
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I know too that surgery is no with RSD but if the screw are causing more of an issue sometimes surgery is needed for help. For 3 years where the surgery scar was it was an open lesions of 5in and couldn't have anything touch it or walk on it I found out the nerve had a neuroma on it keeping it on fire and the scar open. It was the first surgery I was to have after having full body rsd and was scared but went through it. My pain doctor was very important with it. I was placed in patient and an epidural was placed in to make so I wouldn't feel from my waist down. He also an hour before the surgery started ketamine drip, some drs do lidocaine. He also had my main pain meds given to me. I was in hospital 1 week with the epidural then another 2 with ketamine running before the flare was controlled. The surgeon that did the surgery said it was a good thing he went in as he said my nerve looked like it was put through a shredder. Since Iam with a new doctor who has really helped when I need surgery he does basically the same as the other just not using the epidural depending on the surgery, they also give me 100 iv fentanyl to help with pain waking up. since I have had 5 different surgeries and I do go into the flare for various times while in hospital. Another way if you don't get ketamine or lidocaine then some get a nerve block before the surgery. Iam now needing an ankle replacement and a rod put in my femur due to bone death and collapsing. those are scaring me greatly.
Everyone of course is different with their rsd and how it reacts and what helps and doesn't also where its located. One surgery I had to remove my thyroid for cancer I actually came out smiling the way they handled the nerves really helped.
If your going to have the surgery I would talk with your pain doctor so they can speak with the surgeon on different protocols or things that may help you pull through with the least pain possible.
Good luck in whatever you decide.

Samantha
But that first surgery for me to get the nerve fixed was a huge success without it I still would have a lesion and not be able to use it.
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Old 12-31-2014, 02:49 AM #5
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hi Tia. i am sorry you're going through so much pain. i broke my wrist in 2011 and needed to have it reset because wrist, hands and fingers didn't line up properly, but my ortho surgeon and pm dr advised against doing surgery on it again because they thought it would make rsd pain worse and spread. so i have a crooked wrist and hand and am unable to bend my wrist and can barely bend my fingers. if i were you i would get a few more opinions from people who know what rsd is. a neurologist, pm dr and ortho surgeon. hope whatever you decide you feel better soon. take care.
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Old 12-31-2014, 06:58 AM #6
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Default Thank you!

Thanks everyone! I plan on speaking to my pain management doctor and get his opinion on the surgery. I did get CRPS as a result of the foot surgery and the fact that my foot doctor has to go back to the same area really scares me. I do not want this to spread but I also don't think I can fully function with these screws in my foot long term. Also there is the possibility of the screws breaking if I don't have them removed and that's a scary thought too.

A lot to consider and I do have time to get other opinions and thoughts (I wouldn't have the surgery until March).

I really appreciate the support you get from this board
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Old 12-31-2014, 09:31 AM #7
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tdggal1980 (great year; 1980):

If I was in your position, these posts are exactly what I'd want to read. Great advice from everyone. This board is indeed good.
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Old 01-04-2015, 12:23 PM #8
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Tia ,I'm sorry your going through this ,is a lot to handle and yes ,crsp and surgery is subject that we all got scare of for sure.
I had a surgery to treat my rsd/crps which gave me the worse pain I had and still have ,I battled a dr decision to let an scs implanted in my good leg and ended with rsd spreading and nerve damage ,so yes remove it the best option and take good care after the surgery with the right pain meds will give you relief of not feeling In danger of spreading ,trust me even one tablet a day will give you that sense of security .
I hope you get better soon and let us know how it went . Jesika .
Ps always go prepare with questions and do your research,learn the most you can and keep a journal handy with dr appointments add comments of what you discussed , meds ,ect ,it is the best inversion you can make , many times you will be the one teaching your dr about your own condition be always prepare , some links to help,
www.rsdhope.org. www.rsds.org
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